The objective of this study is to review ethical and clinical guidelines and position papers concerning the presymptomatic and predictive genetic testing of minors. The databases Medline, Philosopher's Index, Biological Abstracts, Web of Science and Google Scholar were searched using keywords relating to the presymptomatic and predictive testing of children. We also searched the websites of the national bioethics committees indexed on the websites of World Health Organization (WHO) and the German Reference Centre for Ethics in the Life Sciences, the websites of the Human Genetics Societies of various nations indexed on the website of the International Federation of Human Genetics Societies and related links and the national medical associations indexed on the website of the World Medical Association. We retrieved 27 different papers dealing with guidelines or position papers that fulfilled our search criteria. They encompassed the period 1991-2005 and originated from 31 different organizations. The main justification for presymptomatic and predictive genetic testing was the direct benefit to the minor through either medical intervention or preventive measures. If there were no urgent medical reasons, all guidelines recommend postponing testing until the child could consent to testing as a competent adolescent or as an adult. Ambiguity existed for childhood-onset disorders for which preventive or therapeutic measures are not available and for the timing of testing for childhood-onset disorders. Although the guidelines covering presymptomatic and predictive genetic testing of minors agree strongly that medical benefit is the main justification for testing, a lack of consensus remains in the case of childhood-onset disorders for which preventive or therapeutic measures are not available.

The European Convention on Human Rights and Biomedicine was adopted by the Committee of Ministers of the Council of Europe on 19 November 1996 and opened for signature in Oviedo, Spain, on 4 April 1997. As of the moment of writing 11 Member States of the EU have ratified the Convention: Cyprus, Czech Republic, Denmark, Estonia, Greece, Hungary, Lithuania, Portugal, Slovakia, Slovenia and Spain. The overall purpose of this article is to analyze whether these ratifying EU Member States have fulfilled their obligation provided for in article 1 of Section 2 of the Convention ("each Party shall take in its internal law the necessary measures to give effect to the provisions of this Convention"). We further explored the legal consequences of ratification of the Convention. We analysed for each ratifying Member State whether and how the ratification of the Convention has influenced patient rights legislation and policies. Finally, we concluded by dividing the 11 Member States into 4 categories depending upon the already existing patient rights legislation at the moment of ratification and the constitutional provisions related to the ratification of an international treaty in general in a given Member State.

Age is not the only decisive element when considering the participation of adolescents in decisions affecting their health. The clinical geneticists referred to cognitive, emotional and sexual maturity and the support of parents as crucial elements in their comments regarding when to tell children about their genetic risk or to allow adolescents to request a carrier test.